Lab results - looking for opinions [PLEASE READ 1ST POST]

Maria Fisher46 said:Hey there,

You can't just rely on blood work to pin down a lymphoma diagnosis; you really need a biopsy, usually starting with a lymph node. I've seen plenty of cases where the blood counts look absolutely perfect even when someone is dealing with lymphoma, especially in those early stages—honestly, I’ve even seen patients with advanced disease whose lab results were totally flawless. Usually, though, as things progress, you start seeing shifts in the bloodwork. It could be anything from anemia to low white blood cell or platelet counts—which typically happens because the malignant cells are crowding out the bone marrow or triggering some autoimmune response—or you might see high white cell counts with lymphocytosis because those bad cells are circulating, or even high platelets due to paraneoplastic syndromes or just some relative increase from blood loss.

Thanks. So, does that mean ultrasound or X-rays would actually be more telling than just looking at blood work, along with how the patient is feeling and if their symptoms are ramping up?
And what about tumor markers? Like Ferritin, LDH...?

Robin Scott9 said:Respectfully, first off, thanks to Nicholas Myers for everything he does here. Great work. 🙏

Can someone help me make sense of these blood results? (Male, 28 years old, 6'2", 176 lbs). As you can see from the images, the values aren't wildly outside the normal range, but it feels strange. My doctor keeps telling me everything is fine, even though several markers are flagged with an H or L.

It’s worth noting that my lymphocyte count has been elevated during my last three or four blood draws. My TSH fluctuates between 4 and 6 (my endocrinologist thinks I don't need medication yet). Occasionally, my urine looks cloudy at night—almost like I spilled a bit of milk in there—and there's a slight stinging sensation when I go (though the urine culture came back sterile). Also, my creatinine has been hovering right at the upper limit for about two years now. Glucose was normal in previous tests. Other symptoms include eczema on my face that's quite itchy, stinging, and peeling. Thanks!

https://prnt.sc/vhhacm
https://prnt.sc/vhhaud

Hello,

Regarding the deviations in your labs: they are certainly present, though the question is their clinical significance. You mentioned urinary issues, but I don't see the urinalysis results here.

Your triglyceride concentration suggests moderate hypertriglyceridemia. Did you follow fasting protocols strictly—meaning no food for 12 hours before the draw and avoiding high-fat meals for 24 hours prior?

A TSH in the range you mentioned (up to 6 mIU/L) sits in a gray area. According to the current American Thyroid Association guidelines for rational diagnosis of thyroid dysfunction, one should determine fT4 (T4) and antibody levels, then monitor both fT4 (T4) and TSH every 6-12 months depending on those findings.

The low iron concentration is unusual for a man in his prime, who would typically be expected to have optimal levels. Do you engage in regular athletic training or sports? Are you taking any dietary supplements?

What specific symptoms are prompting you to check your lab work so frequently?

Would you consider these results to be within a normal range?
The lymphocyte and neutrophil counts seem a bit strange to me... they have been outside the normal range or right on the edge for quite some time. I gave birth nine months ago and am currently breastfeeding. This was also the case after my first pregnancy six years ago; for about a year, if not longer, those levels were consistently abnormal or borderline. Back then, my doctor suggested it might just be a virus, even though I didn't feel sick at all, despite experiencing various other symptoms that we couldn't quite pin down. I actually wrote about that here on this thread back then.

Do you think I should undergo any additional testing?

My MPV is also at the upper limit of the normal range..

Thyroid, hormones, and ultrasound are all fine..

Regarding my heart, a few months ago I was told I have mild mitral valve prolapse..

I frequently feel lethargic and exhausted..
Around my sixth month of pregnancy, I started experiencing frequent heart palpitations, which led to me having a Holter monitor, an ultrasound, and an EKG... but nothing serious was found besides that minor prolapse, which shouldn't cause major issues. I was prescribed Quarter-note, although the doctor mentioned it wasn't for long-term treatment but rather as needed; given that my blood pressure is already low at 90/60, I worried it would drop even further, so I never actually started taking it. I did take potassium, as that was below the lower limit at the time.

I’ve also dealt with tingling sensations, shortness of breath, chest tightness, and pulsing in my neck. It feels as though I can't fully expand my abdomen, almost like my stomach is stuck against my spine, making it impossible to breathe normally..

I once had to call emergency services because my pulse spiked above 125, my heart was racing, I felt completely weak, the area around my mouth went numb, and I struggled to breathe—it felt like hyperventilating. Everything finally settled down only after I ate two bananas..

I’ve even started wondering if I might have a hiatal hernia, though during a transnasal endoscopy two years ago (while I was living in Denmark), nothing was reportedly found.

I’ve also had LPR for ten years now, diagnosed a few years back... the therapy hasn't helped. I deal with postnasal drip, throat burning, vocal cord fatigue, occasional mild neck pain, constant throat clearing, and snoring... especially in the morning or after meals. I only had H. pylori once, ten years ago, which was cleared up with antibiotics and has tested negative ever since... what bothers me most is this CONSTANT FEELING OF HUNGER, which actually seems worse after eating.. the only time I don't feel this "hunger" is while I am actually chewing and swallowing food or chewing gum.. I wonder if I should repeat the endoscopy here in the States or perhaps try pH monitoring?? This is driving me crazy and is starting to affect my mental state and mood..

Oh, and I've had scoliosis since my school days; my right shoulder sits lower, my shoulder blades flare out slightly, and my shoulders slouch inward... essentially, poor posture..

Additionally, for the last six years—starting after my first pregnancy—I get this itching sensation on my face that feels like a sting, lasting about half an hour. It happens daily sometimes, other times it passes for a few days. I’ve seen two dermatologists, and based on my descriptions and photos, they suspect chronic urticaria.. it always occurs only on my face, often in the exact same spots. I'm not sure how to link it to anything else... my only known allergies are pollen, grass, trees, and ragweed..

Anyway, I've rambled... if I remember anything else, I will add it..

Emily Ortiz27 said:Thanks. So, would imaging like an ultrasound or X-ray be more telling than just a standard blood panel, along with general physical state and any intensifying symptoms?
And what about tumor markers? Ferritin, LDH...?

It’s difficult to give you a simple, concise answer. There is no single "smoking gun" symptom for lymphoma, nor is there one reliable blood marker that provides a definitive diagnosis. Even Ferritin and LDH can come back perfectly normal. Diagnosis relies on a biopsy. Everything else—clinical signs, symptoms—just helps a doctor decide whether a biopsy is necessary in the first place. Until that sample is taken, we're essentially guessing. Furthermore, the technique matters; if the biopsy doesn't capture enough tissue, you could end up with a false negative. It isn't straightforward. In my experience, I've seen cases where a patient had lymphoma despite having completely normal labs—patients who were actually gaining weight and felt great, showing zero outward signs of illness. Then, a lymphoma is confirmed entirely by chance.

Megan Jones27 said:Should I run any more tests?

MPV is also sitting right at the upper limit..http://uploads.tapatalk-cdn.com/202...b7fc2ea139.jpg

Looking at these results, I don't see any red flags that would warrant further investigation.

Maria Fisher46 said:It’s honestly tough to give you a straight, quick answer to something like this. There isn't some magic symptom or "smoking gun" sign for lymphoma, and there isn't a single blood marker you can just point to and say, "Yep, that's it." Even things like Ferritin or LDH levels can come back totally normal. At the end of the day, the only way to know for sure is through a biopsy. Everything else—all those other clinical signs—just helps a doctor decide if they should pull the trigger on a biopsy or not, but until that tissue is actually looked at, nobody knows if someone has lymphoma or not. And let's not forget, the technique used for the biopsy and the quality of the sample itself matters just as much; an inadequate sample can easily lead to a false negative. It’s just not that simple... In my own practice, I’ve seen all sorts of things, including cases where a lymphoma was present but every single lab result looked perfect. I’ve even seen people gaining weight and feeling absolutely great, showing zero outward signs of being ill, only to have a lymphoma confirmed by total accident later on.

I totally get that this is incredibly complex stuff and there aren't any easy shortcuts or brief answers here.
Thanks for putting so much effort into this discussion. 🙂

Emily Ortiz27 said:May I pose a theoretical question stemming from a recent discussion, one where we haven't quite managed to find a definitive answer via Google...
Does the progression of Hodgkin lymphoma or non-Hodgkin lymphoma impact blood counts, or is it detectable only through a lymph node biopsy or bone marrow examination?

It certainly does influence blood work, both before and after the fact, much like how El Gato described it. However, it is vital to consider the age of the individual in question, examine their specific lab results, and understand the underlying reason why suspicion was raised in the first place. It is important to remember that Hodgkin and non-Hodgkin lymphomas are not particularly similar entities when you look at their clinical presentation and subsequent treatment protocols. The "gold standard" for this type of hematological diagnosis remains the aspiration of enlarged lymph nodes or a bone marrow puncture—essentially leading to a bone biopsy later on. While laboratory findings can certainly act as a compass pointing toward further diagnostic steps, they are often quite non-specific on their own.

I am not sure if you caught my previous post where I updated my list of symptoms... but there are a few more things I forgot to mention. When this all started five months ago alongside the heart palpitations, I also experienced increased thirst, dry mouth, and frequent urination... On a couple of occasions, my right eye would twitch slightly during a blink, and I occasionally saw what felt like flashes of electricity.

It is quite strange how things will settle down for a while, only for them to resurface again...

During the summer, I would randomly experience this tingling or prickling sensation all over my body, along with weakness and a heavy feeling in my right arm... It was a very unsettling sensation, almost as if I weren't fully present in my own body...

Keith Gonzalez said:It definitely plays a part, whether it’s before or after, just like El Gato pointed out. But honestly, you really have to ask about the specific person we're talking about, look at their actual labs, and figure out why anyone is even questioning things in the first place. HL and NHL aren't exactly twins when you look at the lab results and how you actually treat them. The "gold standard" for this kind of hematology work is doing lymph node punctures if they're swollen, or bone marrow punctures—which basically leads to a bone biopsy later on. Lab tests can be super vague, even if they give you a hint of where to look next.

To be specific, what we're dealing with here is a kid who has enlarged and multiplied lymph nodes across all regions, though the ultrasounds show them looking reactive.
Nicholas Myers has been tracking these labs for years (the little guy just turned 7, and he's been under medical supervision since he was 3.5).
The lab work doesn't show anything majorly off, though there were some immature cells showing up in the blood smears. A second round of testing didn't turn up a definitive cause either.
We had one node examined, and it’s been over a year and a half now without any real worsening.
Two punctures came back inconclusive, so they eventually did a biopsy on a conglomerate in the neck. The findings were mostly mixed, with an elevated proliferation index...
Also, there's little to no IgA, and it isn't being compensated for by IgG.

We were warned about the possibility of developing an indolent (?) form of lymphoma, so we're staying on top of it with constant monitoring.
But really, it's just blood work most of the time, while we head out for neck, abdomen, and armpit ultrasounds maybe twice a year.

Sometimes we run into info that totally clashes with our current approach, and I just feel this nagging need to dig around to make sure we aren't missing a step somewhere.

Thankfully, the kid is doing great—super lively, full of energy, eating well, and honestly, his presence alone helps take the weight off our shoulders.

Keith Gonzalez said:Based on my DKS results, I’d say this is all stemming from the eczema. It feels like it’s pushing toward something chronic, and honestly, the flare-ups might be driven by those elevated white blood cell counts. I might need to bump up my iron intake a bit, though it's not strictly necessary. 😁

I've been dealing with eczema for about seven years now. It’s a bit of a seasonal cycle—it stays pretty quiet during the summer, but once winter hits, it absolutely goes wild.

Maria Fisher46 said:Hi there,

Regarding the deviations in your lab results, they definitely exist, but the real question is how much weight we should actually give them. You mentioned having some issues with urination, but I don't see the actual urinalysis report here.

Your triglyceride levels suggest moderate to high hypertriglyceridemia. Did you actually stick to the fasting instructions—meaning no food at all for 12 hours before the draw, and avoiding anything heavy or greasy for the 24 hours leading up to it?

A TSH level in that range—up to 6 mIU/L—is definitely sitting in that gray area. If you follow the current guidelines from the American Thyroid Association regarding rational diagnosis for thyroid dysfunction, the standard move is to test your fT4 (T4) and antibody levels next. Depending on what those results show, you’d typically just monitor your fT4 and TSH every 6 to 12 months to stay on top of things.

Seeing low iron levels in a man of this age is pretty unusual. You’re in your prime, so your numbers really should be rock solid. Are you doing any intense training or playing sports lately? Also, have you started taking any specific supplements?

What kind of issues are you all actually dealing with that require checking your lab results this frequently?

As for my urine tests, they’ve mostly come back normal. Every once in a while, there’s a note about some mucus or bacteria, but nothing major.

As far as triglycerides go, I'll admit I didn't stick to that rule—though, in my defense, nobody actually told me to.

I've run my thyroid labs a few times now. Everything comes back looking pretty solid, except for that TSH level—it keeps drifting just slightly into the "high" zone.

When it comes to iron, I’ve been dealing with this headache for probably 10 or 15 years now. The first time it was actually serious—if I remember correctly, my levels were down to a 3, and nobody bothered to dig any deeper into why. So, I end up on an iron supplement regimen for a while, then I stop, then I start again... just a constant loop. On top of that, my Vitamin D is pretty low; it clocked in at 29 during my first test, when it really should be north of 75. I’ve been supplementing for a bit, so I’m planning to head back in for some follow-up blood work in the next few days.

As for working out—mostly, yeah. I wouldn't call myself an elite athlete by any stretch, but I hit the basketball court and get to the gym three or four times a week. I do have those stretches where I’ll take a few months off entirely before getting back into the swing of things. I also supplement with protein.

As far as symptoms go, everything was perfectly normal until about six or seven years ago, aside from my low iron levels. That’s when I had to go on a round of antibiotics for H. pylori, and that’s exactly when my digestive issues kicked in—specifically pale, constipated stools. Honestly, I’ve been dealing with that almost every day since. Around that same time—likely a domino effect from the infection—my skin started acting up right as the weather turned cold. I started getting the redness, itching, stinging, and peeling I mentioned in my last post. It follows a predictable cycle: it flares up all through the winter months and finally settles down during the summer. As a result (or at least, that’s my theory), I’ve also been dealing with swollen lymph nodes in my neck.

Regarding digestive issues, I've had a few endoscopies done, and celiac disease has been ruled out. However, a breath test confirmed SIBO. We tried tackling it twice with antibiotics, but the real headache is that we haven't actually identified the underlying cause, so it just keeps coming back.

On top of all that, I'm dealing with pretty significant fatigue and a total lack of energy.

Robin Scott9 said:The eczema has been hanging around for about 7 years now. It settles down in the summer, then goes wild again once winter hits.

As for my urine tests, they’ve mostly been fine, though occasionally they flag "some mucus" or "some bacteria."

Regarding triglycerides—unfortunately, I didn't stick to those dietary rules (don't blame me, nobody actually told me).

I've had several thyroid panels done over the years, and everything comes back normal, except for that TSH which occasionally creeps into the H zone.

Then there's the iron issue. This has been a headache for 10 or 15 years. The first time was a serious deficit—if I recall correctly, levels were at 3, and nobody bothered to dig deeper. I take iron supplements for a while, then pause, and it just repeats in a cycle. Other than that, my Vitamin D is pretty low; it was 29 during the first test (should be 75+). I’ve been supplementing, and I should be getting a follow-up check this week.

Exercise? Mostly, yes. I wouldn't call myself an elite athlete, but I play basketball and hit the gym 3 or 4 times a week. Sometimes I'll take a few months off before jumping back in. I use protein supplements.

In terms of symptoms, aside from the low iron, everything was perfectly normal until about 6 or 7 years ago. That's when I went on antibiotics for H. pylori, and my digestive issues started—pale, bulky stools (which have basically persisted to this day). Around that same time, likely as a consequence, my skin issues kicked in whenever I caught a cold heading into winter—redness, itching, burning, and peeling. They flare up through the winter and calm down in the summer. As a result (or so I suspect), I get inflamed lymph nodes in my neck.

On the digestive front, I've had a few gastroscopies. Celiac disease was ruled out, but SIBO was confirmed via breath test. We tried treating it twice with antibiotics, but the problem is we never found the root cause of the SIBO, so it just came right back.

Beyond all that, I deal with significant fatigue and a total lack of energy.

You need to get your ferritin checked. That TSH level suggests subclinical hypothyroidism, which needs annual monitoring, but personally, I’d ask for anti-TPO testing too. Leukocytosis can happen if you smoke, but given the eosinophilia and basophilia, it's almost certainly tied to skin atopy. Stick to a lipid-lowering diet for at least three weeks, and I’d also recommend taking high-EPA omega-3 esters. The changes in stool and the rash immediately made me wonder if we were looking at dermatitis herpetiformis or celiac disease, but since that was ruled out—I hope they checked for tissue transglutaminase antibodies, though a definitive celiac diagnosis really requires a duodenal biopsy and pathology report.

Andrew Jones12 As specified by Robin Scott9:
You should get your ferritin levels checked. Your TSH indicates subclinical hypothyroidism, which just needs annual monitoring, but I’d definitely push to have anti-TPO tested as well. As for that leukocytosis, it could just be from smoking, though given the eosinophilia and basophilia, it’s almost certainly tied to skin atopy. I'd suggest sticking to an anti-lipid diet for at least three weeks; I'd also recommend supplementing with an omega-3 ester that has a high EPA content. Honestly, the changes in bowel movements and the rash immediately made me wonder if we were looking at celiac disease rather than dermatitis herpetiformis—though I see that has been ruled out. I really hope they ran the tissue transglutaminase antibody tests, since a definitive celiac diagnosis usually requires a duodenal biopsy and a pathology report to be certain.

Thanks for helping me piece this diagnosis together. 👍

My ferritin levels look fine—sitting at 194 (on a scale of 21-274) according to an old lab report I dug up from 2019. My thyroid antibodies are also coming back normal, so the only thyroid-related metric that occasionally acts up is my TSH. I don't smoke, and I’m pretty convinced my high white blood cell count is just linked to my skin allergies. I'll pick up some omega-3s soon.

Regarding the celiac stuff, I’ve had the anti-tTG IgA and anti-DGP-IgG antibody tests done twice now, and both times they came back negative. I'm attaching a screenshot of the actual lab results here—I had the blood drawn just about a month ago. https://prnt.sc/vl5c5z

Even though my antibody tests came back negative, my gastroenterologist was still suspicious enough about celiac disease to order a gastroscopy. The results from the first one were basically a wash—the doctor noted that the sample wasn't clear enough to draw any real conclusions, though one little note mentioned an increased number of CD3 lymphocytes. So, the GI decided to go back in for a second look and took more samples himself this time. Once again, the results were inconclusive. However, since the lymphocyte count was under 30 this round, he felt confident enough to rule out celiac disease entirely, given the combination of those antibodies and the lower lymphocyte numbers. To top it all off, my dermatologist suggested I get a specific wheat IgE test just to be safe. That came back at 0.13 KU/l, so that’s another negative for the books.

I forgot to mention that since my digestive issues kicked off right after a round of antibiotics—and I started dealing with this white coating on my tongue—I had two stool tests done specifically for Candida. The results were pretty vague; they just noted that "yeast was present." By the third test, the lab indicated there was a smaller amount of Candida, along with a disclaimer that Candida is actually a standard part of the gut flora. I also went a step further and had two tongue swabs checked for fungal infections. One came back positive for Candida, though that was shortly after I had my tonsils removed, so I'm wondering if that might have skewed the result. My most recent swab, however, came back completely clear. To wrap things up, I ran serum antibody tests for Candida—IgG, IgM, and IgA—and all three came back negative.

Personally, I suspect the root issue lies somewhere in my digestive system, though getting a clear diagnosis has been an uphill battle. Given that I’ve been dealing with pale stools, I can't help but wonder if there's a bile deficiency at play or perhaps some influence from SIBO. If SIBO is indeed the culprit, what's actually triggering it? From what I've read, it often crops up when stomach acid levels are too low. There's also research suggesting that long-term exposure to H. pylori can lead to that same lack of acidity. Whether that happened to me, I honestly don't know. What I do know for certain is that during every single one of my four gastroscopies, gastritis was present. Of course, that doesn't automatically mean the gastritis is caused by excess acid. There is a specific diagnostic tool called the Heidelberg test that can pinpoint whether you're dealing with too much or too little acid, but unfortunately, that isn't something they offer here in the States. I really believe that test would shed some light on my situation, but that's more of a gastroenterology question than a matter for blood work.

Aside from everything else, I’m a bit thrown by one low blood sugar reading I got—everything else looked pretty standard, though. Also, my creatinine levels have been hovering right at the upper limit for a while now, and last time, I actually pushed past it.

*edit—I was looking back through my other labs and stumbled upon something interesting that somehow slipped under my radar. It turns out the ASTA test my ENT ordered (to check for a staph infection) came back positive— https://prnt.sc/vl5z2o

I recently had a skin swab done for some flaky patches on my skin, and it confirmed a Staphylococcus aureus infection— https://prnt.sc/vl60i5

I would appreciate some insight regarding my OGTT results. My fasting insulin came in at 42.6, but after the 120-minute mark, it spiked to 260.3. My HOMA-B activity is sitting at 67.2%, peripheral insulin sensitivity is 104%, and my insulin resistance index is 1.0.
My fasting glucose was 5.8 mmol/L, which then moved to 7.0 mmol/L after 120 minutes. Thank you all in advance!

Hey everyone, I really need some help here,

So, we've got someone born in 1962. Because they've been hanging out in a room for years where there might be smoke or carbon monoxide leaking in from a wood stove, we did a finger prick blood test.

COHb = 3.4

Reference ranges:
Non-smokers < 2
Smokers 1.5 - 5
Heavy smokers < 10

My big question is—could this slightly elevated COHb level actually be linked to smoking fewer than 5 cigarettes a day? Thanks a ton!

If anyone has a moment, I’d really appreciate your thoughts on this:

I just went in for some blood work because I have a cataract surgery scheduled for December 7th, 2020. I’m 61 years old, about 6'0", and weighing in at 271 lbs. For my blood pressure, I’m taking Nebilet and Triplixam, and for mental health, I'm on Risperdal, plus Controloc for acid reflux and Andol pro100. I also spent a few months popping Voltaren Rapid to deal with some pain in my right knee and hip.

The results came back:

RBC 4.07 L Ref: 4.34-5.72
Hemoglobin 88 L Ref: 138-175
Hematocrit 0.284 L Ref: 0.415-0.530
MCV 69.9 L Ref: 83.0-97.2
MCH 21.6 L Ref:27.4-33.9
MCHC 309 L Ref: 320-345
RDW-CV 20.8 H Ref: 14.6-16.5

Neutrophils 34.6 L Ref: 44-72
Eosinophils 15.8 H Ref: 0-7
Basophils 1.5 H Ref: 0-1

Glucose 7.4 H Ref: 4.4-6.4
AST 123 H Ref: 11-38
ALT 74 H Ref: 12-48
GGT 141 H Ref: 11-55
CRP 14.1 H Ref: 0.0-5.0
HbA1c 6.5% H Ref: 4.2-6.2
HbA1c 48 mmol/mol H Ref; 22-44

Everything else seems to be within the normal range.

Thanks.

Just got my knee MRI results back.
I could really use some help making sense of this.
I’ll just paste the part that looks messy/concerning.
The posterior horn of the medial meniscus shows grade 3b traumatic degenerative changes.
The medial cruciate ligament is distended and surrounded by a small amount of periligamentous fluid—grade 1 lesion.
There's a significant amount of fluid in the suprapatellar bursa and bilateral parapatellar areas. Also, some mild edema in Hoffa's fat pad. There's a little bit of fluid in the back of the joint near the popliteus tendon.

I went to get some blood work done, and I've been feeling this shortness of breath—like I just can't get a full, deep breath. It’s that frustrating sensation where you feel like you need to yawn, but you only manage to get halfway through the inhale.
It happens to me every now and then.
On top of that, it feels like there’s a thick buildup of mucus in my lungs; once I cough it up, breathing becomes a bit easier. I deal with dry mucous membrane syndrome, which causes some issues.
I used to be anemic, so I'm taking iron supplements.
As for my heart, I had a full checkup this year—echocardiogram, Holter EKG, and a Holter blood pressure monitor—and everything came back perfectly normal. I don't have any swelling. I did experience swelling back when I was anemic, but that cleared up once I started the iron.
Aside from that, nothing stands out, except for a slight tremor that hits me occasionally, especially in the morning. It’s similar to what I experienced when I had thyroid inflammation; it feels like my whole body is vibrating. It’s somewhat like neuropathy, though the sensation is slightly different from the neuropathy I actually have. Sometimes it feels quite like hypoglycemia, and eating something helps. Also, in cycles lasting about 2–3 months, I start sweating profusely regardless of what I'm doing, then it passes, only to return later.
I have SLE and APS Sy.
What could this lab result mean?
They didn't check my blood gases.
(For context, my mother had monoclonal gammopathy, which didn't progress to multiple myeloma, and she also had RA.)
This sensation of air hunger and being unable to take a deep enough breath has been bothering me intermittently for years.
A spirometry test showed a slightly low PEF about six years ago, but nobody really gave it a second thought at the time.
Lately, I've also been feeling some pain in the lower front part of my neck, which made me wonder if it might be related to my thyroid...
I'm feeling a little anxious about this...
My lupus is under control, and my doctor has taken me off hydroxychloroquine, so currently, I'm just taking Andol 100 mg for APS Sy.
My hair has been falling out like crazy over the last few months; I'd say I've lost at least a third, if not half, of my hair.
I had a chest X-ray last winter, and the results were clear.
If there were an issue with my lungs, I'd assume any damage would have shown up on the scan during the years I've been dealing with this.
Results:
https://iili.io/Kn39ea.md.jpg

Brenda Alvarez24 said:I went to get blood work done and I have this sensation that I'm short of breath, like I can't take a full breath. It’s like when you need to yawn, but you only manage to get halfway through the inhale.
It hits me occasionally.
Along with that, I feel like there’s a mass of thick mucus in my lungs, and once I cough it up, breathing feels easier. I deal with dry mucous membrane syndrome, which causes issues.
I was anemic, so I'm taking iron.
Otherwise, I had a cardiology checkup this year—echocardiogram, Holter ECG, and Holter blood pressure monitor—and everything came back normal. I wasn't breathless then. I was breathless when I was anemic, but that cleared up with the iron.
Nothing specific, except for a slight tremor in the mornings, similar to what I had during my thyroid inflammation. It’s like the body is vibrating—a tremor similar to neuropathy, though the sensation is slightly different from my actual neuropathy. Sometimes it feels very much like hypoglycemia, and eating helps. Also, in cycles of every 2-3 months, I sweat profusely regardless of activity, then it passes and returns.
I have systemic lupus and antiphospholipid syndrome.
What could this result mean?
They didn't measure my blood gases.
(By the way, my mother had monoclonal gammopathy, which didn't progress to multiple myeloma, and RA.)
This feeling of shortness of breath and being unable to take a deep enough breath has bothered me periodically for years.
My spirometry showed a slightly low PEF six years ago, but nobody flagged it at the time.
Lately, I've also been having pain in the lower front part of my neck, so I wondered if it might be something with my thyroid...
I'm a bit worried...
As for the lupus, it's under control. My doctor took me off chloroquine, so now I just take Andol 100 mg for APS Sy.
My hair has been falling out crazily over the last few months; I've definitely lost about a third, if not half, of my hair.
I had a chest X-ray last winter, and the image was clear.
If there were something wrong with my lungs, I assume any damage would have shown up on the scan over the years since this started.
Result:
https://iili.io/Kn39ea.md.jpg

Dear Sophie,

I'm not one to suggest tapering patients in SLE remission off chloroquine, so I don't know why your physician decided that was the move.

The results show elevated hemoglobin and hematocrit levels. They aren't massive, but given the symptoms you described and your underlying conditions, they could indicate hypoxia—a lack of oxygen due to lung issues. Usually, this points toward chronic hypoxia, a process occurring over a longer duration.

Inflammatory markers, specifically ESR and CRP, are missing. I think, alongside radiological imaging, it would be wise to check your acid-base status, as you mentioned. If you are coughing things up, a microbiological analysis of that mucus would be a good idea. Beyond that, considering your primary diagnosis and current symptoms, I suggest a pulmonary workup—something previously recommended—which should include spirometry, a 6-minute walk test, and CO diffusion capacity, followed by further investigation if needed. Similarly, given the neurological symptoms and the sweating, you should have your electrolytes and thyroid hormones checked, since those with SLE often have co-occurring autoimmune thyroid disease.

Maria Fisher46 said:Dear Sophie,

I personally wouldn't advise patients in SLE remission to stop taking chloroquine, and I honestly can't wrap my head around why a doctor would make that call.

Looking at these results, the elevated hemoglobin and hematocrit levels aren't particularly alarming on their own. However, when you consider your current symptoms alongside your underlying health conditions, they could be an indicator of hypoxia—essentially, your body trying to compensate for a lack of oxygen due to lung issues. This typically points toward chronic hypoxia, which is more of a gradual, ongoing process rather than a sudden event.

It looks like we’re missing some key inflammatory markers, specifically ESR and CRP. In my opinion, alongside any radiological imaging, it would be wise to check the acid-base status, just as you previously suggested. If there is any coughing involved, getting a microbiological analysis of that phlegm would be a smart move as well. Given the underlying condition and current symptoms, I’d strongly recommend following through with the pulmonary workup that was mentioned earlier. This should ideally include spirometry, a six-minute walk test, and CO diffusion capacity, with further testing if necessary. Additionally, considering the neurological symptoms and sweating, it makes sense to check electrolytes and thyroid hormones; after all, individuals living with SLE often deal with co-occurring autoimmune thyroid issues.

My doctor didn't provide the rest of my test results yet, so I asked him to forward everything directly to my pulmonologist. I remember having similar symptoms once before that landed me in the ER; back then, after an initial screening at a local clinic, the doctor sent me straight to the emergency room at Jordan. These are the findings from that visit.
https://iili.io/Knowbt.md.jpg
I can't see the image you've shared, but if you could describe what’s in it or type out the text, I’ll get right to work rewriting it for you!
https://iili.io/KnoOzX.md.jpg
I don't actually have epilepsy, though my EEG results have been a bit off since I was diagnosed with SLE. Because I deal with trigeminal neuralgia and have an allergy to Tegretol, my doctors decided that Lamictal was the best path forward given my medical history. After consulting with several different neurologists across Washington, D.C., they finally reached a consensus on this approach.
My contact at the local hospital told me to hold off for now because they aren't taking new patients; they're completely swamped dealing with COVID. Basically, there hasn't been any movement since I got my referral, and no further testing or follow-up has happened yet.
I've dealt with low potassium and muscle cramps quite frequently over the years. I'm actually experiencing some cramping right now, so I've started back on Kalinor. It’s become a bit of a routine for me; once I notice the symptoms kicking in, I'll take the Kalinor and then follow up with a checkup to stay on top of things. As for my cortisol levels, they were perfectly normal during my last test.
A few years ago, I dealt with thyroid inflammation. When I went back for follow-ups a few months later, my labs looked fine, though my endocrinologist did note some latent hyperthyroidism. Since then, however, my weight has spiraled out of control—I’ve gained about 33 pounds in just two years despite making zero changes to my diet or activity levels. It feels like a losing battle; even while cutting my intake down to a meager 900 calories a day, I actually gained another 11 pounds. Nothing seems to work. My TSH levels were within the normal range, and my doctor insisted that everything was perfectly fine.
I could try to push them to move my case forward to processing, though I have my doubts about whether that will actually happen. My primary care physician is quite generous with referrals, which is a nice change of pace compared to other doctors I've dealt with—both personally and through what I hear from neighbors around the neighborhood.
My mother dealt with RA, Hashimoto's, and monoclonal gammopathy—they actually suspected multiple myeloma at one point, but thankfully that wasn't the case. To be safe, she underwent bone marrow biopsies roughly every two years.
My rheumatologist over in Arlington had to cancel my follow-up appointment for next week, and they haven't given me any indication of when we can reschedule. To make matters worse, I haven't been able to get a hold of her at all. It’s a bit uncertain how this will play out, especially since there are rumors they might be relocating the clinic to a new facility near downtown, though nobody seems to know exactly when that transition will actually happen.

Could a chest X-ray show changes that might explain this? My scan from last winter was completely clear, and I’ve generally felt fine, except during that bout of pneumonia. Since I started dealing with these issues—which has been at least 15 years now, though luckily not constantly—things have been a bit tricky.
I've also struggled with anemia in the past.
https://iili.io/KnxRBs.md.jpg
Back then, I could barely keep my eyes open, and even walking just a few steps would leave me winded.
Now, that feeling hits me within a day or two if I stop taking my iron supplements. If I miss them for even 5 or 6 days, I feel short of breath immediately.
Otherwise, my activity levels are totally normal; I take the stairs instead of the elevator for several floors and don't notice any shortness of breath (unless I skip the iron), nor do I feel like I'm gasping for air. Today, I managed to walk 2.5 miles without any trouble at all.
Honestly, I find myself hoping it's just anxiety... (truthfully, that would be the most welcome explanation of all!)

P.S. Thanks for the reply! I'll try to convince my primary care physician to order at least some of the tests you mentioned.

Maria Fisher46 said:Dear Sophie,

I don't personally advocate for patients in SLE remission to stop taking chloroquine, and I'm not quite sure why a typical doctor would decide to take that specific path.

Your lab results show elevated hemoglobin and hematocrit levels. While it isn't anything extreme, given the symptoms you've described and your underlying condition, it could potentially signal hypoxia—essentially a lack of oxygen caused by lung issues. This usually points toward chronic hypoxia, which is a process that develops over a longer period.

We are missing inflammatory markers here, specifically ESR and CRP. I believe it would be wise to follow up with some imaging and, as you mentioned, an acid-base status test. If there is any coughing involved, a microbiological analysis of the phlegm would be a good idea too. Beyond that, considering your primary diagnosis and current symptoms, I'd suggest undergoing the pulmonary workup previously recommended. This should include spirometry, a 6-minute walk test, and CO diffusion capacity tests, with further investigation if necessary. Additionally, because of the neurological symptoms and sweating, it would be prudent to check your electrolytes and thyroid hormones, since people with SLE often deal with co-occurring autoimmune thyroid issues.

Well, I finally heard back from the American Thyroid Association. They claim everything looks fine, my lungs sound clear during an exam, and they're suggesting it’s all psychosomatic.
So, here I am, stuck in limbo.